dawn

Morgan, Reiki is basically the balance of our energy. They are "healers" they basically hold their hands a couple inches from your body and channel your energy. Sounds hokey but I personally know a man who became a healer after a near death experience.His tractor tipped over on him. When he awoke from a coma he could heal, he looks at people and can see where their energy is locked and what their health problems are. He moved to Nebraska and has a landscaping business because his family thinks he's nuts. It's a holistic thing. I'm ready to try anything. Dawn

I did take Inderal 10 mg at 7:00am, the tilt was at 2:00 pm. Also took zofran for nausea. For some reason I didn't have tachycardia or anxiety that day like I usually do. My luck Dawn

Miriam, You have my sympathy. The loss of a parent is so hard no matter what the circumstances. My father was an alcoholic all his life, there were 4 of us and his funeral was a mixed mess of emotion. I had to remember it was a disease and inside his soul was still that of God's. The funeral may help bring closure and connection with your siblings, I don't know of course. On the other hand it may be too stressful and make you ill. I guess you have to follow your heart. Sometimes it's hard to hear our inner voice when we are so traumatized. I was lucky to have supportive siblings. It was wrong that you were not told. Before my dad passed my brother asked him if he was sorry for all the beatings he gave him and my dad said no. It hurt my brother deeply. Then my brother asked him to pray the Lords Prayer with him and he did. Remember you were a good daughter and it sounds like you gave your mother alot of love. She knows this. Whether you are at the funeral or at home at the time of the funeral your spirit is with her. God Bless and Guide you. Dawn

I just saw a wonderful autonomic specialist at the Marsfield Clinic. I had the dreaded tilt table but instead of the usual faint my pulse only rose to 126 and my BP went from 106/62-160/106. This has never happened. Any ideas why. He said it was a negative tilt. My other 2 tilts were pulses around 180 and bp dropped. Hoping my body is changing and it's a good sign. Dawn

Morgan, Thinking about you alot. Have you ever tried Reiki for your son. I do believe there are good practioners. His spirit is young and flexible. I'm actually going to try it myself. My sister in law is going first to check her out, she has horrible headaches from a neck injury. Another really good doctor who used to live in this area and deals with pain issues is Norman Shealy. He has written some books, he has done some wonderful things for people. I think he resides in Arizona now, I'm not sure but he answers all emails. I'm sending you positive energy that the tumor is benign. Take care of yourself. Dawn

I'm going to try not to be negative. Morgan your post basically said it all. I do have to say that my classmates and close friends who are physicans with the exception of one went into medicine for the money and the idea of an early retirement. They're not bad people but they are focused on themselves. I have worked with some very kind and compassionate doctors, they usually don't take new patients and they burn out at an early age. They are only human. POTS is often unrecognized because it's so easy to call it an anxiety disorder. We have so many symptoms that they tend to think we have somatization disorder. I recently saw a neurologist who said he didn't know anything about the autonomic nervous system-A well respected neurologist!!!!!! I don't get it. As far as someone famous having this, I think Johnny Cash had dysautonomia, I remember reading it somewhere. We're lucky we have this forum to support each other. Most of us are not going to get it from the medical society. Physicians like to deal with conditions that they can fix. Dawn

Morgan, I don't believe the "God doesn't give us more than we can handle" bit. I think he has definately overloaded you and it's not fair. Sometimes my anger is all I can rely on to get me through these kind of situations. If I get angry enough I get energy, of course when the crisis is over I pay by being too sick to function. I'm so sorry to hear about your son. What doctor would call at that hour? Like you're going to be able to sleep after a call like that. How inconsiderate! Our kids being sick is the worst. You have so much on your mind, and being a nurse is a curse because we always imagine the worst. Sorry about your husband, hopefully he will be OK. Wish I had something to say that would make you feel better. You're in my thoughts and prayers. Nurse-Curse never realized they rhymed. I wish we could drink, a good happy hour would at least put a bandaid on for a little while. Dawn

Radha, I know exactly how you feel. I am always asking myself why am I here? What lesson do I still need to learn? It's difficult to not be hard on ourselves, but this kind of thinking is really just punishing ourselves. It isn't our fault or our choice. I find comfort in my 2 dogs. They snuggle with me and make me smile. I also try to do a page of scrapbooking a day. I asked my friends for some of their favorite pictures and do it for them. Another thought, I have worked in alot of nursing homes, if you called I bet they would have residents who would love a phone call from you or a card. Also the recreational therapists may have projects you could do from your couch. Nursing homes are so understaffed and most the residents are so lonely. Hang in there. I know it's hard to do. Dawn

Jenn, Dr. Low does suggest medication. He writes a letter to your doctor with his recommendations. I have been there twice. He ordered the tilt table, QSART which is a test with electrodes and they test the nerves, it just causes a little burning sensation when they stimulate the different nerves. A sweat test- they cover you with powder then put you in a little tube and turn on the heat to see where you sweat and if your sweat pattern is abnormal (the powder changes color where you sweat. He also does your epinephrine and norepinephrine levels lying still 1/2 hour in a dark room and then standing. Lots of blood tests and usually a 24 hour urine. It's worth the trip. Dr Low considers himself a "consultant" and has your primary physician treat you. Dawn

Dawn 49 POTS (Hyperadrenergic) orthostatic intolerance, mild cardio-vagal failure Thnk I've had it all my life, diagnosed at age 39 Wisconsin Worst: Syncope, graying out, low BP, tachycardia, sometimes brdycardia, arrhythmia, ANXIETY, sweaty cold feet and hands, nausea, slow digestive system, headache, fatigue, diarrhea, vomitiing, intolerance to hot weather. Exercise intolerance. Flushing, air hunger, weight loss. Best: I actually get dressed. Am able to shower while sitting. Meds: Inderal 10mg 3-4 times a day, Xanax 0.5mg 2-4 times a day, Klonopin 1mg at beditime, Zantac 150mg at bedtime, 75 mg in am. Things that help: Knee high compression hose, quart of gatorade daily, 2 quarts of water, salt (I eat alot of big olives). Lay with feet up Things I've tried without success Florinef, 5 different SSRI's, midodrine. Stress really makes mysymptoms worse.

Dawn, We also live in Wisconsin although my wife grew up in Chicago. She has the symptoms of fibromyalgia. In fact for about 10 years that was their diagnosis. Funny you mention driving. She is thinking of driving at night when there is less sensory stimulus. She cannot use the stockings because touch is painful. Have you ever tried Emetrol for nausea? My wife takes Tamezapan to help her sleep. She sleeps a lot better, but she dreams constantly. How is Klonopin in that respect? Christine loves kids. She worked a short time as a teacher's aide when she was unable to finish college because of her condition. Our daughter, Eliana, can help her pull out of depression when she's in a lot of pain. Frank <{POST_SNAPBACK}> Frank, I take zofran for severe nausea dramamine over the counter otherwise. I do much better generally during the evening. Especially with riding in cars. With autonomic dysfunction we all seem to feel really bad in the mornings. One neurologist told me it is because we produce all of our adrenaline while we're sleeping. Klonopin is the only medicine I've ever taken for sleep, it doesn't cause bad dreams. It's a long acting benzodiazopine that is given for seizure disorder (which I don't have). Magnesium also helps a great deal with sleep it relaxes our muscles. Trying a high protein diet without any sugar may help if it's fibromyalgia. Reassure Christine she'll have days that are better than others. Symptoms one day and not the next. My husband calls it "the spinner card." Also, it's very hard to depend on others when we have been independent. I hate it. It's very hard to accept. I was so independent before I truly understand how she feels. I'm going to Marshfield next weds. to see a neurologist who deals with dyautonomia. He is moving to Milwaukee in May. Take Care. Hi Christine Dawn

Dawn, We also live in Wisconsin although my wife grew up in Chicago. She has the symptoms of fibromyalgia. In fact for about 10 years that was their diagnosis. Funny you mention driving. She is thinking of driving at night when there is less sensory stimulus. She cannot use the stockings because touch is painful. Have you ever tried Emetrol for nausea? My wife takes Tamezapan to help her sleep. She sleeps a lot better, but she dreams constantly. How is Klonopin in that respect? Christine loves kids. She worked a short time as a teacher's aide when she was unable to finish college because of her condition. Our daughter, Eliana, can help her pull out of depression when she's in a lot of pain. Frank <{POST_SNAPBACK}>

Christine & Frank, I know how hard it is to accept a chronic illness. I had to stop working in October, I was a school nurse and I loved my job. I did respite care on weekends and even adopted a boy when he was in 3rd grade (he is now 14). I can't give you much advice on acceptance as I struggle with it everyday. I get angry, then sad, then depressed and withdrawn. I am 49 and still have alot of living I want to do. Christiine, you are lucky to have a supportive husband. My husband is too, but to be honest he is sick of hearing about my symptoms and feels helpless. ( I complain way too much and I realize there is not a thing he can do). I have alot of the symptoms on your list. I don't have the head pain. Do you have fibromyalgia? I haven't tried the mestonin yet, my urine sodium is too low. I have heard it causes diarrhea when you first start taking it. I plan on trying it when my sodium gets higher. I wish I had some words of wisdom. I know how hard this illness is to cope with. I think I'm dying everyday. I will keep you in my prayers. I have the low BP and syncope daily and can no longer drive. Elastic stockings do help and keeping hydrated and eating lots of salt helps too. I try to lay with my legs up for an hour a day, I lay on the floor and put them on the couch. I take alot of antacids for the nausea. Sip on coke and eat saltines. Enjoy sex LOL it's been forever. Taking Klonopin at bedtime has helped my insomnia. My balance is terrible but a physical therapist I saw did a treatment for "crystals in my inner ears" that helped both my dizziness and nausea. I didn''t have much luck seeing a psychologist. There are good ones out there but I didn't really click with the one I saw. I found myself resenting her because she was healthy and I wasn't. Well I'm rambling here. Don't give up, there is always sunshine behind the clouds (I'm told). Do you live in Wisconsin. I do. Keep your focus on your child, it's always helped me I used to hold the kids in my lap at school and feel their energy entering me and giving me strength to go on. Dawn

Welcome LindaJoy, Sounds like you have alot going on. Alot of your symptoms could be from the mitral valve prolapse or the WPW I would think. Have you wore a holter monitor? Maybe alot the symptoms are when you have a fast heart rythm(WPW). Alot of people get diagnosed with anxiety disorder and it's really due to their mitral valve prolapse. Hang in there. Try not to think of what it could be. I know it is hard, but fear and worry won't change anything it will just suck up all your energy. Think good thoughts and best of luck at your appointment. Dawn

Hey, Sounds like everyone feels gloomy. Count me in. We have gotten almost 2 feet of snow since last night and it's snowing heavy now. I'm so sick of being sick, my family is so sick of me being sick. I feel like a piece of furniture. I hardly move. ANYWAY, The cardiologist I saw would not sign my LTD form. (surprise, surprise). He said he never heard of POTS and said "I declare ignorance." I brought him some information, he wasn't interested. So back to square one. Their is a neurologist at marshfield clinic that specializes in POTS. He can see me on the 30th. I spoke with his assistant. She said they will tilt me for 30 minutes, that he follows Dr. Grubb's protocols. I guess he's leaving their clinic in May and moving to Milwaukee. 2 questions: Has anyone been to Marshfield Clinic? How long have your tilt table tests been, my other 2 were only 10 minutes. Dawn

Miriam, I have spoke with him on the phone breifly, you're right after the 3rd call. I am cetainly not discrediting my local treating physician in anyway. He is the most intelligent physician I have met in 33 years. I have been a nurse for 29 years. Have worked in a clinics for 13 of those years. I've worked with all kinds of "professionals" The doctors at the medical center I see locally are all kind and compassionate. Unfortunately they usually are at a loss as what to do. I have spoken with Dr. Robertson on the phone on several occasions and he is wonderful and has a great sense of humor. Believe me I have tried every medication and treatment suggested. Working these last 9 years has been a struggle. I do the compression hose, eat 10 tsp. of salt per day. Drink the amount of fluids suggested. Do lower extremity resistant exercises. My weight is where it should be. And on and on and on. I don't want you to get the impression I am difficult and non compliant. That is not the case at all. The cardiologist I see on Wednesday is a physician I used to work with in the cath lab so I'm sure after a few cardiac tests he will sign my form. It's just another sum of money I really can't afford to spend. But gotta do what you gotta do. Thanks for your post. Dawn

RIGHT ON!!!!!!!! I totally agree. My internist hates the social security system. He worked in occupational medicine for 10 years. He says it's a crap shoot. He has a patient who is an alcoholic who got it on the first try, meanwhile his ex wife who is raising the kids, has 2 jobs, diabetes and arthritis has been denied. I think we all need to bother our congressman and legislators daily. I have filed for ssdi (January). Have gotten extra forms to fill out but am expecting a denial. But I am ready to fight this to the end. Wait til some of these doctors or their family members get full blown POTS, things will change. I posted again today under my disappointment with Dr. Low. Read it see what you think. Dawn

Are you sure you don't have your knees locked as your standing? That would bring it on. Also make sure you are taking deep not shallow breaths. Dawn

Thank you for your replies. Sometimes we need to vent and I thank those of you who let me do that without judgment. Yes, he did suggest mestonin, when my sodium level gets to 177 (24 hr. urine). It was 66 at mayo, my most recent test was 87. The local neurologist disagrees with the mestonin and is a big supporter of the midodrine. I intent to try it when and if I stop the diuresis and can get my sodium up. I did not mean to "blast" or "slander" Dr. Low. I was just very disappointed. The form I sent him was 6 questions. My local neurologist who knows Dr. Low suggested I have him sign it as my condition involves the autonomic nervous system. 1) Please describe patient's diagnosis 2) Has the impairment caused the patient to cease working? 3) Is the medical impairment due to a work related illness or injury? 4) Are you the treating physician? 5)Date of your last exam or evaluation of the applicant 6) What is the prognosis for the patient returning to work. I wasn't asking him for help with social security disability. SSDI is a government program that still needs work. Thank you Miriam for enlightening me as to his involvement with the social security system. My long term disability insurance form however through my employer was to be signed by two doctors who have seen me in the past 6 months. In regards to my long term disability claim, through a private organization, I think a form letter negating involvement was less than appropriate. Question 4 on this list was printed for a reason. No, Dr. Low does not see me on a weekly basis, but yes he is in effect, my treating physicican as my internist acts solely on Low's recommendation. I've had this condition for nine years, and my internist, a well respected doctor, has documented and noted my dilema throughout. The bottom line is that I need a simple formality, a signature, and in order to get that I need to see a cardiologist and a neurologist who don't have the lab or means to test me? I can't think of a better person to legitimize my illness than the "founding father" of this line of research. Those of you who have had understanding employers and insurance companies are truely blessed, but there are others who are forced to rely strictly on the endorsement of "consultants" to survive. We seem to be patients of convienience. I was made an example to residents; my tilt table was characterized as "one of the most extreme" he has ever seen, yet he "doesn't have the right to make disability decisions"?

Do most people notice alot more irregular heart rhythms when they do things with their arms above their heads. Actually I used to notice with any extended time use of arms (mowing lawn, raking, shoveling). Now if I paint or hang a picture or even wash the tile in the tub it seems my heart gets very irregular. Dawn

Hi, Interesting posts. I was told I had an anxiety disorder, before I was diagnosed with pots. I have always thought of myself as being adrenaline sensitive due to the fact of fearing my alcoholic father as a child. When he would come home I remember how hard and fast my heart would beat.(at age 5) As an adult it seems like my startle reflex is so much more exaggerated than others. To others I seem very calm and laid back.When I tell them on the inside I feel like I'm coming out of my skin they can't believe it. My 24 year old son says I live 90% of my time thinking about my symptoms-he's probably right. It's a hard cycle to break. It's hard to let go of the "what if's" and just live. Dawn

Christine, I would never discourage anyone from having a baby. Both my pregnancys were difficult due to all day "morning sickness." It was hard to stay hydrated. My BP was low throughout. Some fainting episodes, but it was definately worth it. My boys are wonderful. I remember having alot of tachycardia after I think aggravated due to lack of sleep. I was medication free throughout. Plus looking back I wasn't drinking enough fluids. If you have a supportive husband and family I say go for it. My kids have kept me going sometimes when I would of just given up. They give us strength of spirit. Dawn

I saw Dr Low in September and did all the autonomic testing again (it had been 9 years.) He recommended I work 1/2 time instead of full time. I worked for a month but was unable. His diagnosis was " orthostatic intolerance, autonomic lability, hyperadrenergic state, possibly related to anxiety." My local internist said it was time to apply for SS disability so in January I did this. I am on long term disability through my employer. I have long term disabillityalso through the state of Wisconsin Retirement System. In order to get this I need 2 doctors signatures. My internist signed and then I wrote a nice letter to Dr. Low asking him to sign (they asked for a neurologist or cardiologist signature). I recieved the unsigned form and this letter today. Unfortunately, I do not undertake disability applications. I provide a consultation on the autonomic aspects of the condition but am not an expert on disability evaluations. You should be aware that applications by patients with POTS for disability have almost uniformly been denied. There are several reasons for that. The major reason for denial is that the main reason that patients cannot work is because of fatigue and lack of energy. These complaints are regarded by the insurance agencies as being too subjective. A tachycardia on standing or with exercise is usually treatable and is usually not the main reason that patients cannot work. Additionally, it is not considered as being sufficiently abnormal since these can occur in otherwise normal persons with activity. I wish you well with your health and your future. I am so p----ed. During his exam my BP was 150/90 supine pulse 82, standing BP 125/85 pulse 140. (ON FLORINEF and INDERAL). I had a "robust" increase in heartrate on the tilt table with nausea and severe frontal headache along with the usual syncope. I can't believe him. I will never go back to Mayo. Thanks for listening had to vent. Dawn

So sorry to hear about your son. I suspect my 24 year old son has POTS too. He refuses to be tested. I think I also had POTS since birth. My mother said I would never use my arms to pull myself up, wouldn't hold onto a railing when I climbed the stairs even screamed when she lifted my arms as an infant to put a shirt on or off. I remember my first EKG at age 18 before starting nursing school, I had resting heart rate of 126. I had several treadmills in my 20' and 30's and always had a max heartrate of 240's and my heartrate would not come down after exercising. They would finally let me leave after sitting an hour with a 140 heartrate. What are your sons worst symptoms? It seems like when I was younger I could tolerate the symptoms better. I was a fainter. When I was young I would faint, smoke a cigarette then feel fine. My doctor says the nicotine constricted my blood vessels as they don't constrict on their own. He says my vessels are rubbery llike a baby's and I am 49 now. Just wondering where he was diagnosed and what their recommendations are. Wish you the best.

Hi, Just found this forum the other day. I've been reading all the posts. Lots of good info posted thank you I was diagnosed with pots 9 years ago. This year I had to give up my job as a school nurse and I am really depressed. I feel like the plug has been pulled. I've been a nuse for 29 years. I've always been able to suck up the symptoms, crank up my sense of humor and function. Now I'm so weak I have to sit to shower, most days just stay in my PJ's. I no longer drive due to the syncope. Have low BP try to eat as much salt and water as I can. Florinef and midodrine were a bust. Been on 4 different SSRI's with no effect. I have the hyperadregeneric pots so lots of anxiety. I take Inderal, Xanax and Klonopin for sleep. Dr. Low diagnosed me 9 years ago, I saw him again this September. He recommends mestonin but my sodium level is too low to try it now. My local neurologist disagrees with mestonin because of the side effects. Still the burst of tachycardia with the tilt table. Now I have cardio vagal failure which is new. Has anyone tried any alternative medicine or treatment. I live in Wisconsin. Any suggestions would be appreciated. I did learn biofeedback, I was able to slow my heartrate but not warm my extremities. It seems like when I listern to relaxation tapes I feel worse. I feel like I've given up and can't find anything to motivate me.